"I have to obey my pain" - children's experiences of pain burden in cerebral palsy

Abstract

Purpose

To explore pain experiences of children with cerebral palsy, and how it influences their everyday life. Method

Fourteen children with CP between eight and seventeen years old were included, using a purposeful sampling strategy. They had different experiences of pain, and different degrees of physical and cognitive impairments. Sixteen individual semi-structured interviews were carried out, and analyzed using inductive thematic analysis. Results

Data analysis resulted in the main theme “I have to obey my pain” and four themes were identified. Experiences regarding pain varied (“My pain is mine alone”). Both pain itself and the use of cognitive strategies to cope with pain involved a mental struggle (“Pain brings me down”). The children had to make adjustments to manage their pain (“I want to participate, but I have to rest”). The most important help was to be understood, but adults also provided valuable help with interventions like stretching, medication and adjustment of activity levels (“Others can help me”). Conclusion

Pain was a determining feature in the lives of these children with CP. The wide variety of experiences and challenges emphasized the need for tailored management strategies developed together with each child and their parents.